Tag Archives: Disability

Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

Like this:

I became a self-titled Episcopal Church Geek as soon as I learned the proper order in which to extinguish altar candles, when I was 7-ish. My early days as an acolyte are blamed on my desire to be just like my closest older brother, who is five years my senior. But, once in, I was so enamored with being part of how church functioned that I never thought of leaving.

I was hungry for more.

It could seem cult-ish to say I’ve never questioned my faith, but in all honesty that’s the truth. Because the norm in my religious upbringing was that I was encouraged to ask tough questions of God, the Bible, the preacher, our beliefs, rituals, and more. The thing that allowed me to never question my personal faith was the fact that I had permission to question everything about it. The very freedom that I could so easily walk away meant that I had a reason to find out why it was important to stay.

I was 16 or so when I thought I wanted to be a priest, but it would take another 15 years before I would find my true calling as an Episcopalian. I’m still figuring out the whole priest thing.

This post explores some of the ways I am beginning to bridge my “in real life” disability and chronic disease advocacy work with my passion for helping The Episcopal Church truly welcome everyone. Continue reading Disabled Deputy On a Roll→

Someone so steeped in the public eye shouldn’t have a worry about housing, right?

Yet what I haven’t talked about publicly is my very fear of becoming homeless. I’ve reached out to local representatives about my fears only to be redirected or ignored completely. It’s time you know what it’s like for me facing barriers to safe, stable, affordable housing in Sacramento, California.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.

I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.